Give That Man a Gold Star

I subscribe to Google News updates about Haiti, adoption, foster care, fetal alcohol syndrome and home schooling. I used to carefully scan the articles looking for blog fodder. Now, I categorize them and hope that one day I will read them. One of this weeks alert caught my eye though. I had to link in when I read the title Girls would be thrilled to be your shoes. What in the world did that have to do with FAS? The link took me to an advice column in Indiana’s Post Tribune. A pregnant woman was writing seeking support for her practice of having a glass of wine with dinner. This woman’s mother was “all shook up.” She wanted the advice columnist to tell her mother to chill out. The woman had already talked to her physician and was told that her nightly glass of wine wouldn’t cause harm to the fetus.

And,

“You’re writing to the wrong advice columnist if you want my blessing for that daily glass of wine. I don’t recommend it. Fetal Alcohol Syndrome, which stems from a mother’s drinking during pregnancy, is a leading cause of birth defects associated with mental retardation. When pregnant, it’s smart to err on the side of safety and caution. To my way of thinking, that would mean no alcohol consumption whatsoever!”

Thank you Dr. Robert Wallace for supporting healthy brains!

I get annoyed every time I read about a doctor who does not have the moral courage to tell their patients that, every time a pregnant woman drinks, alcohol travels through the umbilical vein to the developing baby. The baby’s blood alcohol rises with the mother’s. Brains are usually protected from chemical assault by a blood-brain barrier. Doesn’t that sound fancy? It isn’t. Physiologist called it that to increase their self importance. It just means that the cells that make up the walls of the capillaries surrounding the brain are squished really, really close together. The space or juncture between the cell is tiny and big things can’t get through. Think of a camel trying to get through the eye of a needle. Most chemicals we ingest pass by the brain but remain safely inside the blood vessels. The brain is never exposed to them. The cell wall is made out of fat. So, exceedingly small molecules that can dissolve into fat can get into the brain anyway. The blood-brain barrier is not a perfect barrier. Things like alcohol, caffeine and nicotine have a free pass. Why do you think humans drink alcohol and coffee and smoke or chew tobacco? Honest. Did that first bitter cup of coffee taste as good as it did this morning? It affects our brains in a way that we find pleasurable. They couldn’t do that if they didn’t have access to the brain!

Alcohol has access to the brain. Just like mercury and lead, alcohol is neurotoxic — it is poisonous to nerves and nerve tissue. Alcohol kills developing brain cells. Yes, even a little alcohol. I will grant that more alcohol kills more brain cells. But, face it, anyone who has raised a human into adulthood (or anyone who has critically and honestly examined their own life) knows that humans need all the brain cells they can get.

Fatal Link

I have written before that I usually don’t pass along stories of people with FASD convicted or accused of murder. My daughter faces enough challenges without people assuming that prenatal exposure to alcohol makes her innately dangerous.

The Fatal Link: The Connection Between School Shooters and the Brain Damage from Prenatal Exposure to Alcohol by Jody Allen Crowe is a book that links prenatal alcohol exposure with senseless, brutal murders. A teacher, principal and school administrator, Crowe has been on the front lines. He has seen the devastation, the impaired learning, the poor emotional control and the resulting behaviors. He “gets it.” Like me, he walks around looking at the world through FASD colored glasses. He sees it everywhere.

The author researched seven school shootings in Minnesota and Wisconsin. A”prototype” profile for a person with FAS was used to determine whether or not the person responsible for committing a crime had behaviors typical of a person with FAS.

What I found was irrefutable… In every case, the behavior of the shooter fit research-based social and academic exhibitions of brain damage. In four cases, heavy prenatal exposure to alcohol is absolutely confirmed. (page 117)

And, no one asks. Is it possible that there is a link between prenatal exposure to alcohol, emotional instability, brain damage, faulty executive functioning and senseless murder? In my opinion, the strength of this book is that it invites future researchers to answer the questions. Perhaps future police investigations will ask…

Blog Hopping

I have been out and about reading your blogs. I know that many of my readers are from the Fetal Alcohol Community. I thought you might be interested to read this great blog post, Checklist of Neurotypical Privilege: New Draft.

For my readers who follow me because until recently I had been home educating a child with a developmental disability, a quote from this post:

“For a child of my neurotype, everyday teaching of the skills they will need to live in this society is called education or parenting—not therapy, treatment, or intervention.”

For those who have been tracking my spiritual journey, particularly in regards to how the church does or fails to integrate people with neurodiversity into the flock, I would add… My typical behaviors are not considered proof of an unrepentant, unregenerate, sinful heart.

Hat Tip: Mrs. C, Top Shelf (For those of my readers who are vertically challenged, hop over to Mrs. C’s Top Shelf post and watch the video.)

Dear Stranger

From a note left on my windshield:

“Please let your daughter learn in peace.”

Today was Marissa’s first day in school. She is not homeschooling this year. She is being educated outside of our home. She rode a public school bus to school this morning. I had anticipated that she would be coming home the same way. Her bus schedule stated that she would be home at 4:11. She scheduled an interview for 4:30. After talking to her bus driver on the morning route, she realized that she would have a lot of trouble making an interview. The route was taking longer than anticipated. She wouldn’t be getting home until about 4:20. She called in a panic. I agreed to pick her up.

She is attending school in a community about 35 minutes away from our home. While I was there, I took the opportunity to go the administrative office to pay for lunches and sign a permission slip allowing Marissa to take over the counter medications while at school. Marissa met me in the office and asked if she could drive home. Marissa has not driven in a long time. She is currently unemployed and doesn’t have money for gas and really has no reason to drive. She asked to drive and argued that she would need to practice in case she got the job she was interviewing for and could finally get her car back.

My head isn’t screwed on right so I said yes. She complained the entire time we were driving. She can’t drive; the kids are too noisy. She can’t focus; the doctors changed her meds and she no longer is on a stimulant during the day. She is bored and just doesn’t feel like finishing the job. Apparently having her classmates see her pull away from the school and letting everyone know that she drives was really all she wanted to do anyway. We weren’t in a place that it was safe to pull over so after a none too pleasant trip we arrived at our destination — Walmart. Marissa’s interview wasn’t for 45 minutes. We didn’t have enough time to make driving home worthwhile. We had to kill some time. Marissa is traveling west in a parking lane that has parking in two directions. The spaces on the right angle west and the spaces on the left angle east. Marissa spots a space on the left. She asks if it is alright to park there. I responded, “Not really.” The space was too close. Maneuvering the van into the space would require that she swing out quite a bit and cut an angle that is greater than 90 degrees. It would be difficult in the best of circumstances. The parking lane was narrow and crowded with people and other vehicles. What I meant when I said, “Not really,” was that she needed to find a new space.

Marissa began to pull into the space. When she finished, our van was not parked well. Okay, I was losing my patience. I wondered aloud why in the world she parked where I specifically told her not to. I didn’t say, “No.” I said, “Not really.” It didn’t compute. I am so frustrated when we fail to communicate. Truthfully, I sometimes wonder if she is just being difficult. I asked her to back up and correct her parking. So, without checking to see if there was a car behind her, she started backing up. There was. I said, “Stop.” Instead of stopping she continued to back up while arguing that I had not told her she couldn’t park in the space. I yelled, “Stop!” She stopped. I then ordered her out of the driver’s seat. She stood in the parking lot while I moved the van into a proper parking position.

After shopping, I found the note.

Really. Except for yelling, “Stop,” and only to keep her from hitting another vehicle, I didn’t raise my voice. Did my body language communicate my frustration? I suspect it did. I know that when I got in the car I sat for several seconds to make sure that I was composed enough to drive. But, I didn’t yell at her in public or demean her in any way.

So, stranger, I really don’t know why you felt the need to comment about my parenting. My daughter was unsafe and she either could not or would not hear me. There are times when it really doesn’t matter if the problem is compliance or ability. The fact is that a car can be a lethal weapon if operated improperly and Marissa for whatever reason didn’t seem to be up to the job today. Besides, she isn’t learning to drive. She is a licensed driver.

Why do random people feel the need to comment on a stranger’s parenting. You see me in a snapshot. You don’t have a clues as to context or the struggles we have had as we try to transition our daughter into adulthood. I didn’t appreciate or learn from your note. It just became a crappy ending to an otherwise crappy experience.

Happy first day of school!

Setting Her Up for Failure?

I am thinking of changing my blog name to acceptance with resignation and surrender. It doesn’t have quite the same positive ring as Acceptance With Joy; the name is too long. Still, it is more true of my current mental status. Adoption experts keep teaching parents that stabilization in a adoptive home results in untold benefits for many of the special needs children currently living in our country’s foster care system. In fact a pediatric psychologist wrote in the recommendations section of an evaluation:

Marissa’s adoption by and care from Ms. S****** will likely be the central ‘treatment’ of her condition. The long-term, dependable maternal relationship that Ms. S****** offers is certainly the greatest gift for Marissa. Pharmacologic and psychotherapeutic interventions can only add to this central ‘therapy’ for Marissa.

Research done at the University of Washington on Secondary Disabilities in FASD lists living in a stable home as a protective factor. Secondary disabilities are supposedly not present at birth. The message consistently given to adoptive parents is that they can prevent these outcomes. How have I done? At 17, Marissa has a history of mental health problems and a disrupted school experience. She has had trouble with the law. She has been confined to inpatient treatment for mental health, twice. She has experimented with drugs and alcohol. She is inappropriately promiscuous.

Despite having been placed in a home that is not violent, where her needs are met and where her parents imperfectly reflect the love of her Creator, she has experienced every single solitary secondary disability. I haven’t protected her from anything really. There are days I feel like a failure. On my sane days, I know that isn’t quite true. With the exception of tobacco (and Ron would say caffeine — I don’t count caffeine), she is not addicted to drugs or alcohol; she doesn’t even regularly use those things. She has not been pregnant. She does not have a criminal record. She has never been jailed. She is one of the only handful of her friends who doesn’t have a parole officer. I am holding out on asserting that she has finished high school. I don’t know if she will. Who in the world set the start day for school based on the 5th birthday? Marissa will turn 18 in the middle of her senior year. I will not be homeschooling her this year. She has told me that she will leave home and quit school on her 18th birthday. The school start date should be designed to make sure that before they are legally emancipated every person has a basic education.

Somehow, in my paradigm, ‘therapy’ and ‘protective’ were related to a good outcome and not just blunting and attenuating a bad outcome. I guess I was vain enough to believe that, because of my awesome parenting, Marissa would be one of 0.6 out of 10 adults with FASD who do not have mental illness. Or, one of the 3 out of 10 adults with FASD who did not have a disrupted school experience. Perhaps, with my commitment to creating “an environment of transformational love” Marissa might be one of the 4 out of 10 adults with FASD who do not have trouble with the law. I mean, statistical possibility is related to but not equal to outcome. Besides, my chances were approaching 50/50.

Now the scariest statistic of all:

To determine levels of independence in adulthood, two additional categories were identified for individuals 21 years of age and older (median age 26):

* Dependent Living was the situation for about 80% of adults with FASD.

* Problems with Employment were indicated in 80% of adults with FASD.

Only 8% of the individuals in the study had no problem with independent living or employment.

To the policy makers, adoption educators, social workers, mental health workers and all the other people who come in and out of my life, I have accepted that Marissa will not be one of the 0.8 out of 10 adults whose life will not be marred by problems with independent living or employment. I just don’t know what to do about it. Our state’s statute concerning disability protection narrowly defines a person with a developmental disability as, “any person age 18 or older who has been diagnosed as having significantly subaverage intellectual functioning existing concurrently with demonstrated deficits in adaptive behavior.”

Tomorrow morning I will leave my home at 6:30, pick up Marissa and bring her for neuropsychological testing. Her IQ test will be redone. As in the past, she will be well rested. She will be brought to a private room; a room without any extraneous stimulation. One evaluator acknowledged that, “This was an ideal testing situation (e.g., quiet, one-on-one) and thus results may not accurately reflect Marissa’s performance at school or home where, for example, directions may be less explicit and there may be significanly more potential distractions.”

Marissa has already asked that the medication she has been taking every day to control her mood be held the morning of the test. It makes her excessively tired and she gets headaches. Would it be totally and completely unethical for me to ask that it be given? Why would I want to create a perfect testing environment when Marissa’s ability to function is going to be tested in a real, imperfect world with medications on-board? Who would be setting her up for failure? Me? Or the people who cannot see, vote and accommodate people who have “demonstrated deficits in adaptive behavior” but a normal IQ?